Tales from a NICU Journal, week seven of thirteen
The past couple of weeks have been anything but smooth for Benjamin as he continues his recovery in ICU. After contracting Rhinovirus, his progress has been non-linear, with much of the medical team’s focus on his lungs and breathing. It’s been a delicate balancing act, with Benjamin on various forms of breathing support and undergoing regular X-rays to monitor his condition.
Understanding the Challenges
Early on, the surgeon had mentioned that Benjamin might face issues with a “floppy trachea.” This condition, common among babies with his diagnosis, involves weaker cartilage rings around the windpipe, making it harder for the trachea to stay open. While this condition often improves with growth as the cartilage strengthens, Benjamin’s initial recovery from surgery didn’t reveal any signs of the issue.
However, the onset of his first chest infection brought the problem to light.
In addition to his trachea, another common challenge for babies with his condition is a narrowing of the oesophagus at the surgical site as it heals. This narrowing can make swallowing difficult, as food or milk can get stuck. The typical solution is a procedure called a “stretch,” where a small balloon is inserted into the oesophagus under general anaesthetic and gently inflated to widen the narrowing.
Tackling Two Challenges at Once
To minimize the need for multiple rounds of general anaesthetic, the doctors decided to address both issues simultaneously. On Thursday morning, Benjamin underwent a procedure to:
Stretch the Oesophagus: The balloon procedure went smoothly, ensuring that Benjamin’s oesophagus is now better prepared for feeding in the future.
Assess the Trachea: The ENT team confirmed that Benjamin does indeed have a floppy trachea.
The procedure was successful, and now the plan is to keep Benjamin on CPAP breathing support for the next two weeks. The CPAP provides gentle pressure to help keep his airway open, reducing the effort he needs to breathe and allowing him to conserve his energy for growth.
Looking Ahead
The next two weeks are a time for healing and growth. After this period, the medical team will reassess and create a longer-term plan for his care.
For now, Benjamin continues to receive his milk through a feeding tube, and while he isn’t taking oral feeds yet, we’re reassured knowing he mastered them before. This gives us confidence that when the time is right, he’ll pick up where he left off.
Esme: A Source of Joy and Perspective
Amid all the challenges, Esme has been a ray of sunshine. Her positivity and resilience bring perspective to our family and brighten the mood for everyone at the hospital. The nurses adore her, and she’s been given her own set of medical equipment to role-play with her dolls—a healthy way for her to process everything happening around her.
As Esme prepares to start school in a couple of weeks, we know she’ll rise to the challenge with her characteristic bravery. While we’ll still be here with Benjamin, her spirit reminds us to focus on the positives and celebrate every step forward.
Gratitude and Hope
We’re grateful for the progress Benjamin has made, even through setbacks, and for the incredible medical team supporting him every step of the way. As we navigate the coming weeks, we hold onto hope for brighter days ahead and the knowledge that this journey is shaping our family in ways we’ll forever cherish.
